MCS and Health Care Accessibility

I recently wrote this letter to a state representative who is working on health care accessibility for the chemically sensitive. I was surprised to hear of any politician who has this issue on their agenda, but it seems this one has a whole committee of like-minded people! We always think we are alone in our struggles. This gives me hope, but I know change is slow in coming...

I am writing on the lack of health care accessibility for people with Multiple Chemical Sensitivity (MCS). MCS is a medical condition where everyday chemical-based products create illness and often life-threatening side effects compromising health and negatively impacting quality of life. For MCS patients, health care is limited due to the lack of fragrance-free policies for staff and patients in medical facilities.

I was diagnosed with Multiple Chemical Sensitivity in 2002 after being poisoned at the school where I taught. Although the school was relatively new, only ten years old, the faulty ventilation system created a mold problem. My first day on the job the carpets were being replaced and the adhesives were being stripped with toxic chemicals. Everyone complained of the various smells in the building, however, it didn't bother me until they all began spraying the halls and classrooms with perfumes and air fresheners to camouflage the stink. When my health deteriorated beyond repair, I lost my teaching career, I was forced to move out of the city away from family and friends, I discontinued most recreational activities involving people, and I reinvented a new, isolated life away from the use of everyday chemical poisons.

Health care in general is a struggle. Most conventional medicine doctors who are dependent on chemical company pharmaceuticals don't recognize MSC and even if they do they are inadequately prepared or trained in knowing how to address it. Research is virtually nonexistent since chemical companies are in control of funding much of the time. When I first started showing signs of MCS, I went a local, well-known hospital with a department specializing in environmental medicine. The doctor whispered confidentially it was clear I was reacting to the air fresheners and perfumes on the job, but if he admitted this, the American Medical Association would "come down on him." After many years of experience I have found disclosing chemical sensitivity is met with patronizing skepticism and condescending sarcasm so I have learned if I want even substandard, partial treatment for any health condition, I must avoid mentioning any complications related to MCS.

Unfortunately, over the years I have mentioned my MCS diagnosis to not only environmental medicine specialists, but naturopaths and integrative or holistic doctors because they acknowledge the problem. The risk with disclosure is the information ends up in my records which are sometimes transferred to other, less knowledgeable doctors. I've been denied specialist care because of this information and I've had conventional doctors treat me with contempt and disrespect after they review my records. Some confess on the phone or in the office that is why I'm being denied. There are no patient protection laws. Doctors can deny treatment or care to anyone for whatever reason. I must constantly be vigilant with what I disclose to any doctor as it can compromise health care options that would otherwise be available to me.

Due to this AMA-controlled denial and skepticism, finding a health care facility that is fragrance-free or scent-free is challenging due to the copious use of perfumes, colognes, air fresheners, or essential oils by doctors, nurses, and staff members. My former optometrist now uses air fresheners due to a ventilation problem after an office remodel. A local dentist sprays his office down with air fresheners. The area chiropractor fills his office at Christmas time with fake floral arrangements and wreaths scented with chemicals. Another local doctor baths in body spray in attempt to hide his own bad body odor. I've even experienced naturopaths or acupuncturists who scent their offices with "natural" air fresheners, essential oils, incense, or scented candles. I cannot enter scented spaces without becoming incredibly ill. The Hippocratic Oath states health care professionals should do no harm. Using poisonous chemical-based scented products in these facilities is contradictory to the whole point of seeking medical care.

Unfortunately, in order to protect my health, I often must disclose my limitations by asking if the air quality of medical facilities are safe. I always call an office anonymously prior to making an appointment and ask if their doctors, nurses or office personnel wear fragrances or use air fresheners. Most do.  If I am told they don't, I cautiously and again anonymously visit before making the appointment unless travel time restricts a casual visit.  Most people don't understand basic questions regarding "scented products" or "fragrances" and have no comprehension of the vast products that are included in this category.  Others defiantly defend their personal habits. The staff at one local clinic does use perfumes and colognes and they have informed me they have no plan to discontinue this unhealthy practice. I was told by the physician's assistant in another facility she most certainly does use fragrances and I should find another clinic.

At even another doctor's office a receptionist told me they didn't use fragrances so I made an appointment and in excited anticipation waited a month to see the doctor. The afternoon before my appointment having not received a confirmation call I called the office myself. Determined to maintain my health knowing I must continuously protect myself from unexpected environmental changes, I asked again if fragrances or scented products were being used. The receptionist informed me, "Of course you can wear perfume! We all do." Shocked I replied, "But I was told your office didn't use fragrances." She became flustered, apologized for not understanding my question, and corrected herself. I sighed in relief and thanked her. This worried me greatly, but needing medical care I was desperate to believe it would work. Fifteen minutes later I was called back and told not to bother coming in because the doctor didn't think it would be a "good fit." I sat on the phone in silence, speechless. She repeated and asked if I understood they were cancelling my appointment at the last minute. According to their cancellation policy, I would be charged $50.00 for any appointment cancelled without a twenty-four hour notice. Unfortunately, their policy did not extend to their own cancellation without adequate warning.

The few health care facilities that do have a fragrance-free policy for staff rarely do they extend this policy to patients as it would be bad for business. Money, not health care, is always the priority. If I choose to risk an exposure out of desperation, I must ask which day is the least busiest and must plan my appointment to be the first one of the day stressing and praying no stinkers will contaminate the air space. This time slot is popular so waiting for weeks for an appointment is a common occurrence. Still, this doesn't always work and if I must cancel due to an exposure in their office, a cancellation fee is always imposed. Having MCS is very expensive.

Even some medical facilities that do have comprehensive fragrance-free policies don't enforce them. I worked for a medical clinic who professed MCS knowledge and had a stated chemical-free policy, but behind the scenes they were spraying toxic mold killer in their plants on the weekends and some of their staff wore scented products to work. When patients displayed side effects from these exposures, the doctors and staff claimed ignorance and blamed the patient. Another medical office has a policy and posts warnings on their doors, however, they have products scented with essential oils in their office contaminating the air. (Essential oils, even those claiming to be natural or organic, are processed with chemicals and emit VOCs making them just as toxic as any other fragrance.) Written and posted policies that are not enforced are false advertising and dangerous to those of us who depend on these protections.

I've heard as many as eighteen percent of the population are seriously chemically sensitive requiring lifestyle alterations to avoid life-threatening complications. Around five percent are classified as disabled due to MCS. Thirty-three percent of the population have minor side effects to everyday poisons and experience headaches, sinus congestion, dizziness, or coughing that can be erroneously explained away as a cold. These statistics have increased in the sixteen years since I was diagnosed.

Those with Multiple Chemical Sensitivity are not the only patients who react badly to chemically-based scented products. People with asthma, COPD, or other respiratory problems are seriously impacted by fragrances. Patients with cancer, autoimmune diseases, headaches/migraines, or women who are pregnant can be very sensitive to scented products as well. Allowing these toxins in medical facilities is detrimental to everyone's health and negates the whole concept of health care.

These are just a handful of examples of how I personally I've been treated by health care professionals in the last sixteen years. I do recognize in the last five years it seems health care is more aware of MCS and more facilities are making a better effort toward safer air quality. This is a slow improvement, but a hopeful one. In addition, although I appreciate the effort of the Affordable Health Care Act in the ability to obtain reasonably priced health care insurance, I resent the requirement of insurance. What is the point of purchasing insurance if health care is not accessible? Although health care dialogue always seems to center on the insurance issue, the medical system as a whole is in dire need of major reform.

Thank you. If you have any questions regarding my experiences, I'd be happy to answer them.

  

These are just a few examples of what I have to deal with when I attempt to go to a doctor. I tried to keep it short, but failed miserably. I could write a whole book on the subject!